Every year, on January 3–the anniversary of her death at age 21, from a very rare cancer, retroperitoneal sarcoma– I write my daughter Kristen a letter. This is the 18th. The others are available if you would like to see them.

Thank you for the attention you might give this.

If you would like to know Kristen better or more about the fight to cure and find better treatments for sarcoma, please go to www.sarcoma.com, the website of the Kristen Ann Carr Fund. (There is also KACF info at Twitter, MySpace and Facebook.) Among other things, there is a brief but very fine video by Mark Cerulli that explains the whole situation beautifully and features many of Kristen’s cast of characters.

May you really live.

Dave

P.S. Christine Ohlman’s song is “The Gone of You,” two versions of which are on her beautiful 2009 album, The Deep End.

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Dear Kristen,

Eighteen years and no, it doesn’t seem like yesterday since you departed from us. It seems like a long time–though not so long that once in a while, I don’t find myself reattached to the emotions and memories of the end of your life.
The better times are easier to remember, or maybe I mean that when those reminiscences come, there’s no resistance, they are not accompanied by fear. Mostly, there’s just the pure pleasure of re-experiencing your growing up, the laughs, the triumphs, and even the failures, the trials of courage and patience and understanding that we shared. These memories are of life, and they are true, therefore some of it is “bad.” Anybody’s life is made up of misfortune as well as blessings.
Death is another matter. I suppose as a release from suffering, you can call it beneficial. But suffering in that degree isn’t part of life so much as it is part of death.
I cannot say, as the blues song does, that if it wasn’t for bad luck I wouldn’t have no luck at all. Part of the shock of your death is that we had been so fortunate, that things had to that point worked out so well.
We were lucky to have made a real family, you, Sasha, Barbara and me, and luckier still that we were able to extend that family to include Michael, and your aunts and uncles and my mom and Jon and Barbara, so many of your friends, especially Ilyse, and a whole bunch of others. You kids are the best of it, and not just in my memory. No trouble in school, no misbehavior that mattered a damn. Your futures weren’t a hope, they seemed assured.
Then our luck turned. It turned on you, of all people, and it turned viciously.
You could make a case that we are still a fortunate family. Lucky that losing you, who sometimes served as our center of gravity, didn’t shatter us, but instead, left us bonded for the rest of our lives.
A lot of those people we think of as family will be here tonight and the rest will be thinking of us, which really means, of you.
Yet tonight, even tonight, the room will spin around Sasha. That’s as it should be, because in a few weeks—days, really—she’ll add to our family a baby boy: A son for her, a grandson for us. In these next years, all the rooms will spin around him, I promise.
Sasha, with her courage and wisdom, has brought us so many gifts—I’m sure you could imagine, since she was your other half. I am not sure you could imagine how beautiful she is, right now, though. It isn’t so much a surprise as a wonder. An unqualified joy, in the way that only children, and their expectation, can be.
I hadn’t thought of this for a while, but now I remember how much you loved kids. There are some photographs of you holding the newborn child of a friend during your last trip to California that radiate your presence in a way that no others do.
What’s in those photos is life. Not a shadow of death. Not a hint. The camera lies so well.
So, is it death I’m here to discuss with you, or life? You’d say, life, because about death there can be no discussion. The older I get the more I realize the rightness of your choice—not to talk about it but to speak and think, whenever possible, only of life. Life, over which we have at least some control. Life, which offers much more joy than sorrow, which can transform the dingy mud of winter into spring’s green exuberance.
I don’t know why life is so much harder to describe than death. Maybe because life is complicated and ever-changing; its joys seem to come and go so quickly we can overlook them, while death is simple, because it’s final. Not even the biggest fool could miss it, although God knows, they try, every last one of us.
Death is also part of life’s complications, though, and not a small part. Death bears a message, and those who succumb to its infatuation want to believe that the story is that Death conquers all. But that’s not really it. In fact, life is supreme. Life is where our focus must remain, and if we have to struggle for it, then we need to find the beauty in that struggle. Death is not an accomplishment, just an inevitability. Life is another matter. “Tell me,” asks a character in one of James Baldwin’s novels, “do you find it hard to live? I mean really to live? Not just to go to the job and come home and go to sleep and get up and eat and go back to the job—but—to live.”
Everybody will say yes. I doubt everybody, at least a little. I doubt me—sometimes a lot. But by the end of your life, I didn’t doubt you. There was pain and there was suffering but the focus remained on living, really living. Barbara and I were just now listening to Enya’s “Wild Child,” because that was the song playing when you died, and we always gather for a few minutes on this mournful anniversary to listen: “Ever feel alive / And you’ve nothing missing / You don’t need a reason / Let the day go on and on.” There you are.
So you set a standard, and, in dying, put us to the test. Not an easy test. All of us fight every day to get to, to stay in—hell, sometimes to believe in—the very real spirit of life as you lived it.
I thank you for setting the standard. And I do try. All of us do, no reason to doubt that. But you know, it’s like that song Christine Ohlman wrote after her mate, Doc Cavaliere, died: “I’m out here in the big wide world / It’s a beautiful place sometimes / I keep my eye on the sparrow and my mind open wide / But I just can’t keep from crying / I miss the gone of you, the gone of you, the gone of you / Right now.”
And I always will.
Love from your pop,
David

Tags: cancer and young adults, death of children, fathers and daughters, Kristen Ann Carr, Kristen Ann Carr Fund, sarcoma

This entry was posted on Tuesday, January 4th, 2011 at 5:34 pm and is filed under Linking, Thinking, Writing. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.